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Friday, July 25, 2014

Sounding the Real Alarm: Battling Autism Hate Speech

For this post, I am going to be talking about Autism
Speaks’ new documentary Sounding the
Alarm: Battling the Autism Epidemic, shown at Massachusetts General
Hospital’s Lurie Center for Autism, but before I do, I want to explain
something in response to a question some of you may very well ask.Before you ask me, “have I seen Sounding the Alarm?If you haven’t, how can you say it’s bad?”
why don’t I ask you, “Have you ever read Adolph Hitler’s Mein Kampf?”“Have you ever
watched Keeping Up with the Kardashians?”“Have you ever eaten a fried Snickers?”If you can ask me how I can hate Sounding the Alarm if I’ve never seen
it, is it not fair for me to ask how you can know that Mein Kampf is hateful, that Keeping
Up with the Kardashians is idiotic, or that fried Snicker’s bars are
disgusting?Now, assuming you reading
this are following along with me, I would like to tell why I am against Sounding the Alarm and to mention that I
have heard respectable reviews about this movie from sources I trust very much
the way you may have developed distaste for Keeping
Up with the Kardashians.Just like
the average citizen makes their decision about new movies in theaters by
reviews from critics, I make my decision about Sounding the Alarm by people I trust and who have seen the movie,
though you’re free to watch it if you doubt me.These sources include well-known writer and mother of a severely
autistic child, Susan Senator and people from Charity Navigator’s most highly
rated autism charities such as the Autism Women’s Network and the Autistic
Self-Advocacy Network.Now, if you can
forgive me for the fact that I may be unfairly insinuating that you are in-line
with the makers of this movie, you will see what I have wrong with it, and
perhaps why I may have come off so harshly at you at the same time.

-In the beginning, there is a black screen showing
statistics on the “rising rates of autism” accompanied to threatening music.

-At
no point in the film is there mention that the rising numbers of children being
diagnosed are due to the increasing number of professionals able to diagnose
autism.

-Throughout the film there is talk of the costs of
autism.One example includes Autism
Speaks co-founder Bob Wright lamenting the fact that children (or rather)
people don’t die of autism, despite the fact that his grandson is
autistic.There are also interviews with
doctors talking about the millions of dollars autism costs and parents
complaining about having to pay for “autism therapies” out of their pockets.

-Nowhere
in the film did they mention this: that many autistic people find ABA, the
autism treatment most discussed in the film, to be degrading and
dehumanizing.It takes eight hours a day
of ABA for it to show any effect, hindering children’s right to be a child, not
an experiment.

-In part of the film, a young man with autism and Down
syndrome was shown with his parents and care-givers explaining how he was
unable to communicate.

-He
was communicating right in front of them and they weren’t listening.Even though he wasn’t communicating with
verbal speech, he was trying to communicate to them, and like many autistic
people, he tries to learn to communicate with people around him failing to
listen.

-At one point in the film, a man named Dan Spitz of Anthrax
came on, calling parenting a child with autism “a living hell.”He later complains about having to work to
provide autism services for his child, and hugs his wife goodbye before he goes
on tour.

-The
fact is, most parents have to work to provide for their families.According to Autism Women’s Network
contributor Lei Wiley-Mydske, “I know plenty of military families who have
Autistic children who are separated for long periods of time that don’t blame
it on Autism.Once, my husband went to
the Canary Islands to work for eight weeks because he has to work so that our
family has money, but he didn’t blame the fact that our child was Autistic for
our separation.Maybe it was my Autism
that caused it?In any case, most people
have jobs and have to work to make money and that is not the fault of Autism.”

-There is a scene at an autism walk where they address, a
legitimate concern, that people in marginalized communities do not have access
to resources.

-Autism
Speaks fails to mention how only 4% of their money went into autism services in
2012, and 3% in 2013, on what happen to be their own tax return forms, which
all charities are required by law to publish, yet Autism Speaks continued to
bemoan the lack of services for autistic people.Autism Speaks spends immeasurably more money
on research and administrative costs, rather than on the people who need it the
most.

-At one point in the film, a mother says she cannot trust
her son to strangers because, “Most
days I want to kill him.And I love
him.How am I supposed to expect
strangers to have the patience with him?”This strikes a chord with Autism Speaks former video on autism where
then-Autism Speaks executive Alison Tepper Singer claimed when she found out
her daughter was autistic, she wanted to drive the car with her daughter in it
off a bridge, and the only reason she didn’t was because her non-autistic
daughter was waiting at home.

-There is much talk about research into the causes and
cures for autism throughout the film.The
fact is I don’t need to be cured.I am
not a burden. I am not a living hell.I
am not a science experiment or someone who cannot communicate.I am a college student, a writer, an artist,
a friend-to autistics, neurotypicals, Downs people, dyslexics.I am a flautist.I am an employee, and I am several things
that Sounding the Alarm doesn’t
mention. This is not raising awareness.It is scapegoating, fear-mongering, and comes from people who do, at
best, the bare minimum of what’s expected of them.If their rhetoric of autism being the
equivalent of a tsumani or a burden is changing the lack of autism services,
why are they still complaining about it?Autism Speaks has lost key members now such as John Elder Robison,
author of Don’t Look Me in the Eye,
and noted blogger of A Diary of a Mom,
who spent years trying to reform Autism Speaks, after Autism Speaks co-founder
Suzanne Wright made a speech to George Washington University claiming, “If
three million children in America one day went missing – what would we as a
country do?If three million children in
America one morning fell gravely ill – what would we as a country do?We would call out the Army, Navy, Air Force
and Marines. We’d call up every member of the National Guard. We’d use every
piece of equipment ever made.We’d leave
no stone unturned.Yet we’ve for the
most part lost touch with three million American children, and as a nation
we’ve done nothing.”Followed by saying,
“Maybe their child has been trying to bite them or themselves.Maybe they can’t afford the trip to a doctor
specializing in autism.Maybe there is a
waiting-list for ABA, speech and OT.Maybe
their insurance won’t pay.Maybe they
don’t have the money to pay a special lawyer to fight for school services.”This speech sounds very Hitlerish to me.If you were to hear
Iranian leader’s “Death to America” speeches hosted by Duke University’s
political science program, then you’d see how I feel about this movie.